I’m in the High-Risk 2 Percent. It’s Exhausting.

 – When Sarah Hogate Bacon ’93 gets in a Lyft, She wears one blue nitrile glove. –

On a mid-february flight out of JFK, I skeptically eyed my early 30-something seatmate and his face mask. He looked and sounded healthy, and likely wasn’t on immunosuppressants like me, I thought churlishly. Maybe it’s Covid-19 neuroticism? But who was I to judge? A stranger would never guess from looking at me that my lungs are at 39 percent capacity thanks to an ultrarare disease.

I’m a 44-year-old New Yorker in the 2 percent “high risk” class for coronavirus. In 2013, I was diagnosed with lymphangioleiomyomatosis (LAM), which ravages lungs—including mine—with cysts that block out oxygen, the growth of which is slowed by an immunosuppressant drug called Sirolimus. While I’m lucky to have a treatment at all—95 percent of rare diseases have no treatment whatsoever—I’m susceptible to everything. Last year alone, bronchitis lasted six weeks; a clean kitchen-knife cut in my hand required 24 hours on IV antibiotics; Campylobacter, the foodborne illness, roiled my gut for 14 days; and an infection split open the membrane of my eyeball.

Coping with this vulnerability has become second nature. I stockpile hand sanitizer when there’s no pandemic. I travel with a Z-Pak and zinc throat spray for colds, as well as amoxicillin to treat chance infections from superficial cuts. If a neighbor sniffles on a plane, at a concert, I explain my predicament and ask to move to a new seat. On the subway, I never hold the poles, instead balancing my weight on my wrist; if I hear a cough or a sneeze, I furtively move to the other end of the car. Family and friends know to cancel our plans if they or their kids are sick.

Four weeks ago on a ski vacation, I was less concerned with fears of Covid-19 than with the strep throat my niece came down with at our shared rental. On the trip home, however, the profusion of travelers in face masks at Vancouver airport startled me. By the time I got home to Harlem, a vague unease had set in. My next subway ride was downright paranoid as I suspiciously scanned jostling passengers for signs of illness, panning like a camera in Contagion. I’ve never before been one to fly into a panic, but doubt started finding fissures.

A couple days later, a humanitarian colleague texted: “Hi love. I’m thinking of you. I’m sure the coronavirus stuff has to feel scary given lam.” Bizarrely, I reflected, aside from an occasional morbid thought, I wasn’t experiencing fear. The next day my shrink called, offering to do our appointment by phone instead of in his Upper West Side office. I had rubber gloves, sanitizer, and a scarf to cover my nose and mouth, I told him; I’d be fine. “But you’re high risk,” he said. I replied, “I’m always at risk.” Having fought for seven years to maintain independence and quality of life in the face of my disability, I’m loath—sometimes idiotically so—to give an inch.

Sleep soon became elusive. Was it the moon, I blindly wondered? On March 4, the day before I was to take Amtrak to D.C. for a work trip, my doctor emailed her 200 lam-clinic patients the sterilization and social-distancing tips everyone’s heard about by now, and links to daily updates from the cdc and NYC Department of Health. She also urged us to stock our medication supplies, in case we need to quarantine ourselves. That day, I’d emailed her Columbia University office to schedule my quarterly lung-function tests, to which her assistant swiftly replied, “Dr. D. doesn’t want you at the hospital.” My spine tingled. Monitoring her patients has always been paramount; it’s how she course-corrects treatment plans and protects us from lam’s ugly progression toward lung transplantation. Now she was protecting us from a new, existential threat.

An hour later, my doctor texted me herself to ban me from the subway. I picked up the phone to ask her about my trip. “No Amtrak either.” Suddenly, falling into the high-risk category went from surreal to real. I’d grown accustomed to not trusting my own body, but now I couldn’t trust my way of life. The finely calibrated illusion of control I’d honed around my health blew apart.

In a shrill, weepy, full-blown freak-out, I called, in succession, my sister, a colleague, two besties, and my mother. The notion that navigating my hometown could kill me was petrifying and paralyzing. It was too much to bear on my own anymore, even though I am acutely aware that, eventually, my disease will likely kill me.

I canceled the D.C. trip and found equilibrium again the next morning. The same day I was forwarded a viral email by James Robb, the molecular virologist who studied coronaviruses in the 1970s, which had both credibility and tips I’d not yet heard, including, “This virus only has cell receptors for lung cells (it only infects your lungs).” He might as well have written my name in the parentheses. I forwarded it to about a hundred people, and texts and emails started streaming in, ratcheting up my jitters. “You’ve been on my mind,” “Where are you?,” “Have you headed for the hills?,” “What do you need?” My sister kept texting from Boston, “Why are you still there?” Their genuine concern raised the pitch of my own. Soon my anxiety meds, effective at a fixed dosage for years, stopped working.

As I hatched a plan to get out of the city, I relied on Lyfts, my left hand in a blue nitrile disposable glove for dealing with the outer world. Hunting for more hand sanitizer, I found myself cursing the healthy doomsday preppers who’d cleared out cvs. After a friend posted a picture of herself on Instagram in a costume including a face mask, I snapped at her for making light of precautions. If someone in the elevator touched my dog, I feverishly wiped him with disinfectants. Inspired by Sallie Tisdale’s book Advice for Future Corpses, I even jotted down a “death plan.” My head aches from the stress, and my speech has quickened under its strain.

Covid-19 temporarily robbed me of the sense of agency critical to managing my illness. So, while I can never escape my disease, I am lucky that I can choose to escape New York. On Thursday, I got out of Dodge and started driving south to rural Florida. I’ll be there till it’s safe for me to come back. Whenever that is.

Sarah is a New York-based freelance writer and activist. She is currently writing a book on rare disease citizen scientists called Living with Zebras.

MAKING A DIFFERENCE

The curiosity to ask why and the courage to speak out are qualities that lead to innovation and change. The individuals featured in this issue embody these qualities. Through their questioning, leadership, and willingness to share their views, they are making a difference–in their professions and in the world.